Caregiver Characteristics and Barriers to Resource Use: Findings From a Rural State Caregiver Survey.

Background: Despite the key role family caregivers play in the US healthcare system, they are not systematically identified and tracked, limiting our knowledge about this important group. Objective: Our objective was to identify caregiver characteristics and barriers to service delivery in a primarily rural state. Methods: As part of a quality improvement project, a cross-sectional online survey was fielded in clinical and community settings. Participants included 85 self-identified adult caregivers of another adult with an illness, condition, or disability from within a US state healthcare network. Descriptive analyses were conducted, and inferential statistics were used to compare urban versus rural respondents and older versus younger respondents. Results: Caregivers were responsible for a wide range of care activities and particularly older caregivers spent a significant amount of time providing care. Older caregivers also reported significantly lower levels of burden compared to younger caregivers, yet both groups had clinically high levels on average. Caregivers reported receiving helpful emotional support, but needed more tangible support and were limited by availability and cost. Conclusions: There is a need to fund comprehensive caregiver programing and address caregivers' own social and physical health needs to reduce caregiver burden.

Mixed-Methods Study of End-of-Life Experiences of Patients With Hematologic Malignancies in Social Hospice Residential Home Care Settings.

PURPOSE: Hospice is underutilized by patients with hematologic malignancies (HM), and when patients are referred, they are typically more ill, hospitalized, and with shorter length of stay (LOS) than patients with solid tumors (ST), limiting research about home hospice care experiences of patients with HM. In this mixed-methods study, we examined the hospice experiences of patients with HM who died at residential care homes (RCHs), home-based settings in which volunteer caregivers and hospice staff provide end-of-life (EOL) care under the social hospice model. METHODS: We queried a registry of 535 hospice patients who died at RCHs between 2005 and 2020 that included quantitative medication administration data as well as qualitative data from hospice intake forms and written volunteer caregiver narratives. Qualitative data were analyzed by collective case study methodology. Quantitative comparisons of LOS and liquid morphine use were performed with matched patients with ST. RESULTS: The registry yielded 29 patients with HM, of whom qualitative data were available for 18 patients. Patients with HM exhibited common EOL symptoms (pain, dyspnea, and agitation). Instances of bleeding were low (22%), and notable HM-specific care concerns were described regarding bone fractures, skin integrity, and delirium. Most (78%) experienced good symptom management and peaceful or comfortable deaths. In only one case were symptoms described as severe and poorly managed. Patients with HM had comparable LOS on hospice and at the RCHs to patients with ST, with no group differences in liquid morphine use. CONCLUSION: In this registry cohort, most patients with HM achieved good symptom management in home care settings with volunteer caregivers and hospice support. Caregivers may require additional counseling and palliative medications for HM-specific EOL symptoms.

Social Model Hospice Residential Care Homes: Whom Do They Really Serve?

BACKGROUND: Most prefer to die at home, but the Medicare Hospice Benefit does not cover custodial care, making it difficult for terminally ill patients with housing insecurity and/or caregiver instability to access hospice care at home. OBJECTIVES: To examine the characteristics of patients who received end-of-life care in community-run, residential care homes (RCHs) operating under the social model hospice. METHODS: A retrospective chart review of 500 residents who were admitted to one of three RCHs in Upstate New York over a 15-year period (2004-2019). RESULTS: Patients served by the RCHs included 318 (63.6%) women and 182 (36.4%) men aged 34-101 (M = 77.8). The majority (94.9%) were Caucasian and most had cancer diagnoses (71.6%). Prior to admission, most (93%) patients resided in a private residence, and nearly half (47%) lived alone, but most (81.7%) had full- or part-time caregivers. Nearly all patients were admitted either directly from a hospital (47.5%) or private home (47.2%). Over half (52%) were admitted to RCHs within a month of hospice enrollment, and 20.1% enrolled concurrent with admission. While the average length of stay was 21 days, 50% died within 10 days of admission. CONCLUSIONS: Community-run RCHs represent a unique approach for improving access to hospice home care for patients with home insecurity and/or caregiver instability, yet most patients had prior caregiver coverage and were admitted from a hospital or home setting, suggesting there is a need for community care settings for patients unable to remain at home in the final weeks or days prior to death.

Engaging Future Healthcare Professionals as Caregivers to Hospice Patients in Comfort Care Homes.

Most people wish to die at home yet significant barriers exist in accessing care in one's home, especially for individuals with caregiver and/or housing instability. Across the U.S., residential homes for the dying are opening to address gaps in end-of-life care by recruiting community members to serve as caregivers to hospice patients during their final days. This paper describes a blended-experiential training program, informed by both an evidence-based educational framework and transformative learning theory, that trains undergraduate students to serve as surrogate family members to hospice patients in residential care homes. This study analyzed data from a sample of undergraduate students (n = 35) who participated in an 8-week program. Applying Kirkpatrick's evaluation model, study results indicate the program provided essential knowledge and skills in end-of-life care, benefiting both student learning outcomes and resident care.

Comfort Care Homes: Pressures and Protocols in End-of-Life Care During the COVID-19 Pandemic.

Comfort care homes are community-run, residential homes that provide end-of-life care to terminally ill individuals who lack safe, secure housing and a reliable caregiver system. As nonprofit, non-medical facilities, these homes have faced both new and magnified challenges due to the COVID-19 pandemic. This article highlights the value of collaborative interagency partnerships and shares reflections on the unique pandemic pressures faced by comfort care homes. Innovative ideas for improving community-based end-of-life care and implications for social work practice are included.

Providing End-of-Life Care: Increased Empathy and Self-efficacy Among Student Caregivers in Residential Homes for the Dying.

BACKGROUND: Health-care providers report a lack of training in end-of-life care and limited opportunities exist to learn about the dying process in home settings where most prefer to die. AIM: To evaluate the effectiveness of a Community Action, Research, and Education (CARE) program designed to promote empathy and self-efficacy communicating with and caring for terminally ill patients. METHODS: This mixed-methods study collected pre-post data from 18 undergraduates (7 men≤ 11 women) in a 8-week immersive program where they served as primary caregivers in residential homes for the dying providing 200 hours of bedside care to hospice patients during their final days. Quantitative measures assessed empathy using the Jefferson Scale of Empathy-Health Professions (JSE-HPS) version and self-efficacy using a 20-question palliative care skill assessment. Qualitative analyses were conducted on reflective journals to further assess knowledge, skill, and value development. RESULTS: Paired t tests revealed significant increases in empathy ( P < .05) and self-efficacy ( P < .001) to provide end-of-life care. Thematic analysis of reflective journals further demonstrated specific instances of empathy and self-efficacy. CONCLUSIONS: Community-run residential homes for the dying offer a unique opportunity for skills training in end-of-life care. The opportunity to serve as a caregiver for the dying improved students' confidence and ability to provide empathic patient- and family-centered end-of-life care to hospice patients in their final days.

Loneliness and Depression Among Older Adults in Urban Subsidized Housing.

OBJECTIVE: Depression is particularly prevalent in low-income and disabled older adults, and minority populations face a greater risk of poverty and earlier disability onset. Yet, little is known about the mental health of older subsidized housing residents, a population which is disproportionately composed of persons of color. The study's aim was therefore to explore the prevalence and correlates of depression in this target population, with a particular focus on the role of loneliness. METHOD: Data are from interviews with 216 older subsidized housing residents, of which 50% identified as Black and 45% self-identified as Latino. RESULTS: About 26% of participants met the criterion for depression. The hierarchical regression supported our hypothesis; after controlling for demographic, health, and stress variables, loneliness explained almost half of the total 49% of variance in depression. DISCUSSION: Care models addressing social risk factors are needed to meet the aging-in-place challenges of subsidized housing residents.

Perceptions of neighborhood safety and depressive symptoms among older minority urban subsidized housing residents: the mediating effect of sense of community belonging.

OBJECTIVES: Older minority subsidized housing residents represent a population that is particularly vulnerable to depression. Although research suggests that neighborhood characteristics influence older adults' mental health, it has not been explored in this target population. Drawing on social disorganization and social capital theories, this study's aim was to explore if perceptions of neighborhood safety are associated with depressive symptoms; and, whether a sense of community belonging has a mediating effect on this potential relationship. METHODS: The data are from interviews with 216 older adults (50% Black, 45% Latino/a) living in a U.S. urban subsidized housing development. RESULTS: Among participants, 80% identified feeling 'very safe' during the day while 63% expressed feeling 'very safe' at night in their neighborhood. Approximately 60% possessed a stronger sense of community belonging and 26% had clinically relevant depressive symptoms. Hierarchical regression analyses revealed that perceptions of feeling less safe in one's neighborhood were significantly associated with elevated levels of depressive symptoms; however, a greater sense of community belonging buffered (or had a significant mediating effect on) this relationship. CONCLUSION: The findings suggest the importance of continued exploration of the role of social capital in relation to feelings of safety in later life.

Understanding the relationship between school-based health center use, school connection, and academic performance.

School-based health centers (SBHCs) benefit the overall health of underserved communities. In fact, there is an abundance of evidence suggesting the positive effects that SBHCs have on physical and mental health. However, research related to understanding the relationship of SBHCs to academic outcomes such as performance and school connectedness is sparse. The purpose of the current study was to (a) compare differences between elementary, middle, and high school student SBHC users and nonusers on school connectedness and (b) test the pathways between SBHC usage and academic performance. A structural equation model was tested and found significant pathways between SBHCs, school connectedness, and academic performance.